The Simons Simplex Collection

Most families affected by autism spectrum disorders (ASDs) have just one child with ASD. Often that ASD seems to have come from "out-of-the-blue." It does not seem to have been directly passed down (inherited) from a person's parents or grandparents. It may be the result of changes to genes, called mutations, or the result of an environmental factor that interferes with a gene, perhaps by turning it "on" or "off."

The Simons Simplex Collection (SSC), a research initiative spearheaded by the New York City-based Simons Foundation, focuses on this common form of ASD. While other research concentrates on multiplex families (that is, families with more than one child with ASD), the SSC focuses on families with only one child with ASD, called simplex families. This effort comes at an exciting time in which breakthroughs in gene mapping, technology, and brain research present unique opportunities.

More than 2,600 families have volunteered for the SSC. Family members underwent extensive evaluations and provided DNA, via blood draws, at clinics in the U.S. and Canada. Now this vast store of information on family histories, children's development, and genetics is being studied by a number of scientists to provide insight into ASD risk factors, causes, and potential treatments. What's more, it will be available to researchers exploring multiple questions in autism far into the future.

The SSC has become one of the most important ongoing research initiatives in autism. Because of this, the Simons Foundation doesn't want to lose touch with its participating families. That is why they have partnered with the Interactive Autism Network (IAN) to create a new autism research "home" for SSC families. It's called the Simons Simplex Community@Interactive Autism Network (SSC@IAN). Through SSC@IAN, Simons Simplex families can stay in touch with the project into the future, learning about findings made possible by their participation as well as opportunities to take part in future SSC-related studies or surveys.